How did you stop walking?

[Stacer]

I haven't been here in a while. My name is Stacey, and I'm 40 years old. I've been using a scooter for about 6 years now when I leave the house. I get by with my walker inside. Lately, I'm really struggling with the walker. My legs are weaker and more numb. I also feel the numbness creeping into my back and torso. Are my "walking" days numbered? For those that no longer walk, can you tell me how it happened? Trying to stay positive but want to be prepared.

[mjan]

HI Stacy, glad you are back!

I cannot relate to your walking/leg issue but just wanted to offer you support!
Sorry for the changes you are experiencing. Soon you will get answers from others.

Keep us informed as to how you are doing.

Hugs, Jan

[Stacer]

I went back and searched my previous posts. It appears that I asked this exact question almost 2 years ago. Since then, not much has changed, so I guess that's a good thing. My numbness and weakness is much more intense.

[Karenkay]

I'm still walking, but like you it's getting harder. Some days it feels like a Frankenstein walk. Lol It's gotten so that I can't stand erect for any amount of time like at a sink.

So I really can't answer your question, but I understand.

[Grandma544]

Also wondering how long I have left to walku

It seems that I am in a transition phase. For the last two years I have used a wheelchair when I go out. In the house I use a KAFO. However in the last year my balance has gotten worse. I have had numerous fall misses however two weeks ago I actually had a fall and was in bed for about a week. It seems if I get fatigued I can no longer walk and am using the wheelchair in the house more and more. It seems when I'm not walking and I am bed. I know I can't keep staying in bed. How do I get my mind around using the wheelchair. My mnd tells me the wheelchair is for use when I'm having a bad day and I should only use it for short periods not to be used all the time. How do I explain to my husband it is OK to get up and use the wheelchair? Any suggestions are appreciated.

[kellygrn]

First of all, remember the wheelchair is your friend. It is there to make you life easier. To put your energy where you want to use it.

Of course it didn't help when I broke 14 bones over a 10 year period and my boss told me to get in the wheelchair or find another job. LOL!!!

KK

[Stacer]

Karen -my difficulty lately is also standing erect. I notice it more when I'm at the sink because when I let myself lean, which I have to do after a few seconds, before I know it, I'm bent over!
Grandma544-it's hard. Wouldn't your husband rather you up and about in a wheelchair rather than in bed?

[aitch10]

It had been getting harder and harder for me to walk. When I was pregnant with my second son I started relying on my scooter both in and out of the house so I wouldn't fall, and I just kind of kept relying on it.

Poo.

[90stangg]

I'm still walking, but I use a pair of forearm crutches. I can walk distances with them. I have a scooter I started relying on in the house. Can't carry anything with the crutches. It's gotten so that I can't stand erect for any amount of time like at a sink. If I'm just standing with the crutches again no problem.

[MSW1963]

Stacer, my trunk weakness is now constant, but the 'shuffled' gait that accompanied the initial attack of Apraxia of gait and trunk seems to have, for the most part, resolved. I know I do 'self limit' activity, which must be normal for the brain to protect you with info like 'don't do that' based on pain and possibility of falling.

I'm curious if my hip flexion? sx are associated with the trunk weakness sx. Anyone else experiencing both trunk weakness and hip flexion, or remember if the onset of both were associated?

Getting myself psyched up for outdoor physical activity, anticipating the end of the wet, cold winter season.

[JerryD]

I haven't siopped, yet. I am really limited, though. The answer to your question is " I stop walking when I am too tired to walk". It is 'agonizing', aggravating and frustrating! MS sucks and there is nothing good to say about it !

[Cat Mom]

Not sure which type of MS you have, I imagine it's either SPMS or PPMS. I lost ability to walk during and after a huge flair a few years ago... but it came back! Had to use a computer chair on wheel to get to the washroom, a regular w/c wouldn't fit my upstairs. I was RRMS at that time. I can walk now but mostly using a cane. If a scooter is what's needed, then use it rather than wasting precious energy trying to get around. I hope you get the answers you're looking for.
Jen

[22cyclist]

I started using a wheelchair full time after an episode of transverse myelitis. My legs just won't move and I can't feel them at all anymore. Occasionally I get pain in the feet or calves, but that is it. Weird, but thats how this disease is...weird. The same person who sold me my scooter sold me my wheelchair. I got the best one I could find, light weight, a racing one. I plan to do 5Ks in it if my arms will hold out. Its not the end of the world to have a wheelchair, its just a different perspective of the world. Think of it as an adventure. Be sure to get fitted for one, that is important, you don't want to lug around all that extra weight.

Take care
Good luck
Lisa

[Seasha]

Hi Stacer - I feel like I'll eventually I'll be in a w/c, as after 26 years of damage done (and now SP), it very slowly seems to be heading that way.

Last fall I had ankle surgery and was in a w/c for a couple+ months while recuperating. I finally made it back to standing and using a walker after a couple months of physical therapy. I still do some of the exercises to keep my leg strength! Is PT something of a possibility for you?

PT is wonderful and can help with your mobility among other things. Here's a pdf file from NMSS http://www.nationalmssociety.org/Nat...al-Therapy.pdf It's long but worth the read.

I'm happily using my walker inside and hope for all of us in this position that we can continue to keep the strength! Check out PT - it's really helpful

p.s. I use a wheelchair when leaving my home.

[Thinkimjob]

Started five years ago with a limp. Left leg decided it was going to click and drag.
Started getting absolutely exhausted if I had to walk more than 100 yards.
Started sitting down a lot, but I could still 'get there'. Then came the horrible feeling that I can't stand or move out in the open. Feels like my feet aren't holding my weight, and if I move I'll fall over.

I need something to hold onto. At one point, I could be given an arm to lean on, and that helped, but it doesn't anymore. You need to move your arms and torso, or the wrong thing is a disaster.
Started with walls, shop displays, shopping trolleys ( don't much go to shops anymore).

Now I have a rollator. It is okay, but having to fold the thing up and lift it is not doing my back any good. Not to mention hoicking it over gutters.
Also, it has started to roll faster than than I can walk.

I can still walk, but not so it Some nights just lifting my legs into bed takes both hands.
It had taken years to get to this point, mind.

(And thank you, thank you auto save! I typed this two days ago and thought it would be gone forever after a slight wifi glitch.)